Tag: caregiving

If I visit the small lost and found department of my life, I wonder what I would find there. The things that I don’t even recall losing. That high-collared Lanz of Salzburg flannel nightgown, I wish I had it now for this spring dressed as winter in the North Country.During this pause, this enforced sanctuary, I’m aware of the recent big and small trips I’ve missed. To commemorate my dad’s life in Sarasota; to volunteer at McCurdy School in Espanola. I grieve.Take time to grieve so many losses. And the loss of certainty.Of course, we’ve found things too. Vast swaths of uninterrupted time with darlings. Sometimes bickering. Sometimes laughing. Sometimes walking the dog. Sometimes (okay, a lot of time) watching Netflix.I’ve found that frisson of joy when I hear a friend’s voice on the phone. Definitely, I feel loved.There is – yes – a sense of finding and losing. And we’ve experienced loss.One recent twist, I’ve found a forgiving heart for any and all who live with fear, the shadow self.

And a desire to turn to visual art — as ‘not the thing I do, but the place I visit.’ Imperfectly, yes. For we are only human.

My dad would say, ‘what someone thinks of you is none of your business.’

Last night Chris and I attended a fun JCC Parkinson’s Holiday Party. After rounds of singing and before the raffle, music therapist Barbara Yahr, and Parksinson’s docs Alessandro DiRocco and Rebecca Gilbert spoke about ways to successfully grow older with the disease.

Here are four take-aways — and these apply to everyone:
1. Get more social. Apathy is a real problem for people with Parkinson’s (and thus, their families), because the dopamine, the reward mechanism in the brain, dwindles. To combat this, make sure that you’re getting out and continuing to wire new neuron pathways through interesting conversations and activities. Change your routine. Don’t do what you’ve always done.
2. Eat well. Best foods for Parkinson’s? They really don’t know. Someone from the audience recommended non-inflammatory foods, but the doctors on the panel could not confirm that this was the optimal diet. There was some consensus that the Mediterranean Diet works well for everyone as we age.
3. Be active. What’s the best kind of exercise? The one that you do! If you have Parkinson’s, exercising for 45 minutes six days a week will likely stave off the steady decline.
4. Make a joyful noise. Music helps. Anecdotally, Yahr spoke about the magical powers of music — a way to communicate when speaking fails. And the docs emphasized that any way of making or participating in artistic endeavors — fine arts of performance arts — is good for the brain.

Caroline Kohles: Chris always says she should receive a genius grant. One of the amazing JCC Parkinson’s teachers, Caroline sparks health through exercise and a growth mindset in her NIA class. (photo courtesy of NIANow.)

So, as the moderator of the panel and Chris’s great friend and brilliant teacher Caroline Kohles summed it all up: “Keep a beginners’ mind.”

Keep growing mentally because the brain, at any age, has neuroplasticity. Instead of a fixed mindset, a growth mindset, built on a foundation of persistence, hard work and optimism, provides maximum health benefits.

In writing class, when we read writers’ memoirs, we are all a bit like voyeurs. We like to see how others do it — how they get along with their partners.

It is always interesting, to me any way, to read about marriages. How much are the lovers’ lives, like vines, intertwined? Although I know the topic is tantalizing, my marriage is difficult for me to write about.

My daughter recently texted me this picture of me and Chris — I think it was from the premiere of M. Night Shyamalan’s The Village.

(Pictures are always fun when people are not looking at the camera.)

Let’s face it, I have always been a bit secretly jealous of Chris’s amazing acting career. It’s true I have my own IMDb page and when one of my students discovered this, he has begun greeting me as Sabrina Von Savage, my character’s name in We Might Be Superheroes. Alas, I never achieved the same status as an actor that my husband did. Men have it easier, even in film. And yes, if you say, in his defense, he’s a greater actor than most (including me), I will have to agree.

But still. I am not without my achievements. I did and do achieve greatness through my writing and, hopefully, through my teaching. These successes, however, are harder to quantify.

So back to marriage, that equal partnership. As I wrote yesterday, there is no greatness or genius without a team or a partner behind you. I have been able to expand myself because of Chris. (And, no doubt, I have limited myself too.)

Chris’s Parkinson’s Disease has slowed his ability to move. Diagnosed about 15 years ago, he needs more physical support than ever. He uses a walker or walking stick to get around. It can be taxing on me physically. Does he need more emotional and psychological support too? Maybe. Executive function skills? Yes, these are slipping.

And me? Yes, I need more help, but I am not good at asking for it. Or expressing my vulnerability. This is the lesson from the Dr. Blasey Ford — you tell your truth and you will be glossed over, or worse, ridiculed by the president.

Times are tough for women and for caregivers, who, let’s face it, are mostly middle-aged women, a slice of the population so easily dismissed. But I refuse to be written off. I refuse. I am, after all, a proud feminist and I do believe that I have a professional contribution to make to the world — in addition to, but not limited by, my caregiving for and with my family members.

On Monday, we are going to Chris’s neurologist, who, too, is named Dr. Ford. I am compiling a list of questions for the good man. We always ask about the trajectory of the illness — i.e., ‘if he is at this point, when will he slide to the next low point?’ The docs are always cagey in their replies. They don’t have crystal balls. They refuse to give up on anyone.

Well guess what? Neither do I. I am a member of the creative resistance. Je refus.

Do not go gentle into that good night,Old age should burn and rave at close of day;Rage, rage against the dying of the light. – Dylan Thomas

There they are again. Staring at me as my nails dry at Susie’s Salon on 72nd Street. Michael J. Fox and Tracy Pollan on the cover of People magazine. I wish I didn’t resent their affection for one another and their airbrushed pictures of life with Parkinson’s.

Despite being married to an actor with Parkinson’s, I never felt our Coudal-Jones family and the Pollan-Fox family had all that much in common. They seem to have an ease with the disease. Maybe I am just jealous.

Maybe it’s the money. While Chris and I have done well financially, given that we are artists living in New York, we never had an endless stream of cash for the support of caregivers or chefs or whatever the heck very rich people spend their money on.

I don’t want to feel sorry for myself. For self pity is a hole I could fall into and never climb out of it. (Or to paraphrase Cheryl Strayed, ‘self pity is a street that you don’t want to park on.’) Let’s face it, Jones and Fox, like all people with Parkinson’s, have had different trajectories with the disease.

I feel compelled to emphasize the positive after reading this article (or any time really). Chris is going strong after his diagnosis 15 or 16 years ago. However, he is definitely slowing down. This makes me sad. There are times when he gets stuck and cannot move. Times when he shakes and cannot stop. There are times that he drools or hums incessantly. And God help me, I find some of these major physical shifts so disheartening. I am more impatient than Tracy Pollan. I try to stay positive.

The other thing I resent and again, God I wish I did not resent this, is the way that Tracy Pollan gave up her career. According to the recent article, Pollan was the bright one, the steady and hard working actor while Fox was the goofball. Why did she give up her work? Oh, to raise the children. Right. Right.

Well, I raised the children and I worked too. Sometimes, several jobs. And don’t get me wrong, I have always loved my work. My work has given me a purpose and a value, not to mention tuition money for the kids. Is it my feminism or my work ethic or simply my jealousy that wishes that Pollan would’ve been a film producer or continued to do her acting thing, too? She seems to have been a professional caregiver. (Not that there’s anything wrong with that.) Her work was unpaid, but likely, she continued to work hard. It’s hard work to make caregiving look this easy.

But back to my story. It does not have to synch and jibe with any other wife who has a husband with Parkinson’s. I do not have to be on the cover of People. I just have to be me. And Chris can be Chris. And our kids can be who they are. Likewise, the Pollan-Fox fam can be themselves. We all deal with it in our ways. And the one-day-at-a-time way of dealing with life never fails. Letting go of comparing ourselves with others also seems failproof. So I will let it go and find a way to gratitude.

Just one last wish: that for once, someone famous who is struggling with a chronic illness like Parkinson’s, would say is, “It ain’t always easy.” That’s it. I don’t need their family money or their love for one another (okay, well, maybe a little). And I must pause for a minute to admit here that I do appreciate their quest for a cure. They work hard on that. And they have leveraged their celebrity for a good — no, a great — cause.

Every so often, though, I long to hear, “We have struggled with this.” Okay, then give it a beat and continue, “But we’re still here. We’re still trying to make our best lives. We’re still going to work. We’re still trying to love one another and be loved.” Because, no one is perfect — not enough the smiling couple on the cover of the magazine — but we are all trying. And every family has its struggles and its stories. And every story could go deeper and everyone edits their lives for the sake of word count, print space or how they appear on social media.

Let me forgive Michael and Tracy a little and acknowledge, on behalf of all families with a chronic illness like Parkinson’s, “It ain’t always easy.” But thank you for continuing to show up.

Be real. Be loving. Be patient.

“Self-pity is a dead-end road. You make the choice to drive down it. It’s up to you to decide to stay parked there or to turn around and drive out.”

I should take stock. Here I am winding down the hours of 2013. For the first time in my life, or since I was single any way, I’m invited to four New Year’s parties and one private New Year cocktail party with a BFF so I’ll probably hit the two parties and that one cocktail party.

But I feel a little melancholy. Maybe because my brother-in-law Dan had a stroke a week and a half or so ago and it really bummed me and the whole extended Jones family out. He’s an aces kind of guy — good listener and all. He’s recovering but has a long freakin’ haul. And I guess that’s the thing — no one’s promised another day. This is it. This day’s all we’ve got.

In 2013, I continued to draw life, energy, humor from my kids. What can I say? They drive me bananas but I like bananas. My husband also drives me bonkers. And I’m not as much a fan of bonkers as bananas. He got a bad deal with the Parkinson’s Disease and it’s slowing him down. When he asked the neurologist about the progression of his disease a couple of weeks ago, the doc basically said his progression is average.

Chris was diagnosed almost 11 years ago. It’s been a long time and continues to be a long downhill slide. That being said, I have a compulsive need to always mention him positively on this blog — in the event anyone who knows both of us reads this, so here goes: He continues to be a wonderful person — still very much into theater and cooking and family. He had a nice success in 2013 being featured on the radiolab podcast.

For myself, I also enjoyed some writing successes. The biggest deal was being featured in the Listen To Your Mother Show, a national reading by authors about mothers. We performed live on Mother’s Day at Symphony Space. My piece was funny and angry and honest. I loved performing again. The best part? I made some awesome new friends.

On the creative front, I’ve also been working on a novel that I’ve begun to show some people and the responses are pretty good. And I like it. It’s kind of like Breaking Bad for middle-aged mothers — angry, funny, and honest again! I want to add more sex scenes, but am overcome with embarrassment every time I try that. (And again, I’m very worried about people I know reading it and judging me!)

On this blog, I tried to systematize my posts and hit publish every Friday and Sunday, which helped me in the discipline department. I’ve loved posting pics and media on Pinterest, Tumblr, Instagram, and Facebook too!

For paid work, I’ve had some nice successes. But I’ll post more about that in the new year. I’ve got a couple of new things brewing. But I’ve got to run now — put on some lipstick and dress up for a night out.

So let me shake off this melancholy and shake the champagne bottle. Here’s to 2014!

I do not like asking for help. At last week’s lecture on teen boys, Rosalind Wiseman said getting help is a lifelong skill, I agreed, intellectually.

I am the driver who does not like asking for directions. In fact, I am the sole long-distance driver in my family. Chris’s Parkinson’s Disease — or his meds — have compromised his ability to drive. My son does not yet have his permit. We don’t own a car any more. But I am the family driver, metaphorically too.

At the Yacht Club with Lindsay a few weeks ago. We were toasting out new rules for living.

In 2009, on Lindsay’s birthday, we made up 7 rules for living on the back of a paper napkin while drinking champagne at the Yacht Club. This year we did it again, but had to finish up over coffee the next morning at the Inn. Lindsay Pontius and I made up seven new rules for living. And I will blog about these rules in the coming weeks.

In the last round of rules, my number one rule was Pile on the People. Which I then changed to Pile on the Useful People. Because, at some point, I felt that I was helping more than I was helped by helpful babysitters, caregivers, friends.

For example, I remember hiring a professional babysitter when Hayden was a tot. She took Hayden to the playground, while I stayed home and folded laundry. I loved the playground. I hated the laundry.

Luckily, at that time, I had a therapist, April Feldman, who helped me see the error in this equation. Do the fun stuff. Farm out the chores, like the laundry.

Because of Chris’s Parkinson’s, everyone says to me (and I say to myself) “Get help!” But piling on more people (for me) is often piling on more work. I am exceedingly generous, even to the point of bankruptcy.

This may have to do with my white (and wife) guilt for needing to hire caregivers at all. Caregivers are often people of color. I dont’ want anyone to think that I am better or believe I am better than they are. We are all equal.

The typewriter on the counter at the inn in Westport. So charming.

So what can I do?

Care about the helpers

Go to the park

Farm out the tasks I don’t like

Get help

See that asking for help requires practice.

I wrote this at the 475 Riverside Drive ecumenical library’s first and third Wednesday of every month writing group a couple of weeks ago.

The post was inspired by today’s Daily Prompt. The task was to grab any book, open anywhere, go to the 10th word. I grabbed Melissa Gilbert’s Prairie Tale: A Memoir. My word was “wanted.” As in, Wanted: Help.

Last night we saw A Little More Than You Wanted To Spend, a funny, sad one-man show with and by Chris Clavelli about the death of his 6-year old son Jess.

This sucks. I mean the play is awesome, but the show reminds you that life sucks.

Life is a total crap shoot. You get shit. You get joy. You live. You die. Other people live and die too.

You have to talk about it. You have to write about it. You have to tell about it. You have to live it. You have to make something, maybe theater, out of it.

The sucky part, sometimes, is living on and getting up when you feel like curling up in bed and not getting up.

***

Taking the garbage out last night with my daughter Charlotte, one of our neighbors, a former Hollywood starlet from the 1950s (and this is not even giving her away because we have several senior actresses in our building), asked me, “How’s your boyfriend?” or something like that.

Charlotte looked at me quizzically.

“He’s doing good,” I said, about my husband. “He’s got a great creative spirit. Is directing a show upstate this summer.

The former starlet said, “He’s wonderful. He’s got a twinkle in his eye and great artistry despite the tragedy of his life.”

We said good bye at the recycling bin.

“What did she say?” Charlotte asked. “The what of his life?”

“The tragedy. I suppose, she meant the tragedy of his Parkinson’s diagnosis,” I told my daughter.

I don’t think of my husband Chris’s life as a tragedy.

This is not the first time a neighbor has used stark terms to refer to my husband’s disease in front of my kids. I guess, in the dailiness of life, the reality of Chris’s illness is not a tragedy, it’s normal.

It is not always a comedy, but tragedy? I don’t know. Chris feels he is lucky. He feels there are worse diagnoses.

***

This is the second time I’ve seen Clavelli’s play. It’s blown me away. Made me laugh and cry.

I am friends with Clavelli, and his girlfriend Leonisa, who funnily enough, was my work out buddy at my former workplace, before she and Clavelli got together.

The play reminded me to hug my darlings, to love the people in my life, to laugh and cry with them, to talk about truths, to listen to other people’s truths, to make art.

When someone tells their truth, I can’t argue or judge. Hearing someone’s truth makes me want to tell my truth. Because, I know, making art is a way of healing.

Life is a tragic-comedy.

***

Any way, go see Clavelli’s show. It’s really good. It’s only running in June in NYC.